This discussion has been done here many times before, though the people have changed, the disscussion is essentailly the same. You have some people who didn't have a PEG telling people they should avoid it if possible, others stating how they couldn't have gotten through things without one. In my opinion ADVOCATING for not getting it is a disservice.

First, their experience is unique to them. Their treatments are unique to them, and someone else who is developing severe mucocitis, or swawllowing issues from the radiation treatments (it has never been scientificlly proven that anyone "forgets" how to swalllow) will be poorly served thinking that if someone else got through it without swallowing issues, they will too. These issues are directly related to neuro-muscular and tissue issues related to radiation damage in most cases. Even doctors cannot predict in their patient populations who will have swallowing issues and who will not, so the posters on this board being significantly less informed, and having significantly fewer patient contacts to actually develop a database of patient experiences to draw from, are poorly qualified to express CLINICALLY ACCURATE opinions. They can only talk about their own experience, which may or may not apply to the new person they are posting to. (Your milage may vary) ADVOCATING for something for another person, like NOT getting a PEG, which is only a successful path in a small sampling of all patients, becuase it worked for you, is a disservice. There is a difference between talking about your own experience and being an advocate for people doing what you did. David's argument that this is what he is doing, I do not agree with. He should talk about his experience, but advocating for not getting a PEG is wrong. He is not qualified to urge people to go one direction or another. He certainly has a right to have an opinion, but when the tone of that opinion turns to advocacy - I think this is wrong.

We all have a responsibiliy to provide people with useful information, and speaking of our own personal experiences definately helps people that have not gone through the issues realted to the disease and its treatment is very helpful and reassuring to newcomers. But there is a line that we should not cross here. We are not doctors, we do not know the unique issues realted to each new patient, their unique treatment plans, other collateral issues not related to their disease they may have, and their body's unique response to them, and the TONE of our postings should reflect that.

I don't agree with many things that are posted on these boards, but I only step in when I think that a patient might be getting wrong information, or an opinion that MAY cause them to believe something that might not apply to them. As an example, David and I have disagreed often about his posting to every new poster that they should get an HPV test. He believes this will be of some value to them. I do not, since it does not change anything in their subsequent treatment protocol, at least with what we know today. But his offering that question does not hurt anyone. It might answer a "why" question for them, but still in the overall scheme of things I do not believe it offers the answer to any USEABLE question. I think even that to some extent it confuses the issue at a time when they need to be making serious decisions. So I have quit talking to him about doing this. When somewhere down the road HPV status changes treatments, then it will be a valuable question, today it is not. But the bottom line, despite his passion for that topic, no harm is being done.

The PEG issue DOES NOT fall into that same realm. We can potentially hurt someone with an encouragement not to get something that will make their path through this process better/easier. Any argument that the minor issues that might go along with it, like some people getting an infection or similar minor complications, do not negate its overall benefit to the vast majority of patients.

Lastly, since two people have stated this, it is a patient's right to have or not have any given procedure. But to the vast majority of patients who themselves are not doctors, they are best served by following their doctor's treatment plan. If a doctor recommends that you get a PEG, you ought to follow their recommendation. Like Marcus has stated, you can refuse to have anything done, including radiation, chemo, and PEG tube insertion. My question is, at what point do you think you know more than the doctors and the institution that is treating you? If you knew so much, and thought that your opinion what better qulified than theirs, what are you doing being treated by them in the first place? The most important thing we can do as patients is become informed, and make the best possible choice of treatment facility, and/or doctors. That decision and learning curve is steep and has to happen rapidly. Once we have made that important decision, we have to start deferring to the years of training and experience that they have, and focus on dealing with our own battles, not the least of which is the emotional roller-coaster that we will be on for a significant period of time. If we are going to second guess these more knowledgeable doctors and institutions, I believe we are on the verge of interfering with a process that may save our lives, reduce complications, and negatively impact the optimum progression of events. This does not mean that I don't believe that some doctors can make poor choices, but on the PEG tube issue, I doubt this, except those that we have seen here that have been negligent in getting one for a patient of their who has loss massive amounts of weight, is nutritionally compromised and is in the emergency room for dehydration. If anything those are the treatment errors that we see here.

As to someone who thinks it is OK to drop to a weight that they were at 25 years ago, when they were fit and a marathon runner, I simply state for the umpteenth time... This is not about weight. This is about caloric and nutritional intake and hydration. Rapid weight loss even in a non-cancer individual, is not healthy, and dieters are told this with regularity. You may think wow, I am back to my fighting weight, something that has lapsed over the last quarter of a century as your lifestyle and nutritional and exercise habits changed, but the real question is what nutritional necessity has been compromised in that weight loss? What is your lean body mass ratio at the end of that rapid weight loss? I guarantee you that your lean mass is not the same as it was when you were a marathoner. You lose essential lean body mass along with adipose tissues, and this does not make you healthier. IT IS NOT ABOUT WEIGHT. Lighter is not healthier. That is an over simplification of a very complex situation.

As the the Swedish article, they put PEGS in 97% of ALL their patients. The end of the article is this Quote

Conclusion:
PEG is a safe and a well tolerated way of ensuring enteral nutrition in patients with oesophageal cancer. The risk of the PEG complicating any later operation is minimal.

In another article where they talk about complications, they clearly state that serious complications were mostly related to inexperienced doctors doing the procedure. And as to long term PEG users, there are many reasons for this, none of which are worthy of doctors intervening in the process. Often they are older patients with other collateral complications, that have dysphasia, chronic aspiration pneumonia, and other reasons to keep them. There is no down side to people having them for protracted periods should they choose to, though it is clear that the vast majority get the PEGs out soon after treatments end and ability to eat normally returns.